hair woes

i know nothing stays the same
but if you're willing to play the game
it will be coming around again

i woke late this morning.  my red headed aunt, the one who i was told maybe wouldn't pay a visit during these chemos, burst through the door last evening.  i got nauseous, and achy..... i was even aching around my port.  it's funny how pain will find all your weaknesses, and magnify them.

i started to comb my hair with my fingers.  (still digging this shorter hairstyle... it's fun to poof up, and swing from side to side......)

a big handful of hair came out.

ok, let me be more exact.  more hair than usual.  i've got a lof of hair.  thick, and ornery.  i know it's going to take a-while before there are bald patches.  the oldest said that he could see more of my forehead, sort of like a middle aged man with a receding hairline.

it's just hard seeing more and more hair come out with each combing.  and it's hard to know when to stop....especially in the morning when you're trying to go somewhere, and you can't because you're waiting for your hair to stop raining down.

"it means the chemo is working."

i knew that when i felt the tumour shrink.  do i really need any more reminders?

"it will grow back."

in like ten thousand years.

"no.  it will probably start after the fifth chemo."

i know.  but do you know how forever and a day that sounds?

"i worry about your sense of time."

i'm a poet.  this goes with the territory.

i have scarves.  i have funky slouch hats from hot topic.  i have a buff.  i'm going to get two special scarves soon, to combat the blues.  i'm set up and prepared for telly savalas land......

....but i guess i forgot to prepare my heart.




oh blanche.  stop blubbering.

military maneuvers

i thought to-day was going to be difficult.

i had to get middle man to his drama class in the morning. usually, that means taking him, and waiting with the youngest at a bagel shop. well, yesterday, i was so tired that i wasn't even able to drive to the library down the block without becoming dizzy, and very tired. so i was a bit in a panic.

right now, i'm sitting with the youngest at the bagel place. the writer girl is with me, but she didn't have to drive us here. we're soon to pick up middle man, and go home. i will probably be very tired by then....but i made it.

it all worked out.

writer girl will drive home. i can already feel the cold chill of fatigue in my arms, and on my face. but, luckily, the grip of prednisone has loosened. i can tell by how itchy my skin is. i can tell by how tired i get after being excited.

i can tell because hope is coming back.

if i can learn to control the effects of these drugs.... if i can be realistic, and learn to be quiet when i feel panicked.... if i can keep to myself when i feel my most manic, then maybe i can live through this without losing everyone....

if if if

goals for to-day: get home without crashing. pay a couple of bills. take a nap outside when the sun is the most warm.

try not to worry about what i've done.... and get to the business of finding me....

hope.

after prednisone

i was very worried that the days without prednisone would be harrowing. luckily, it wasn't as bad as i pictured it.

i woke saturday edgy, and wanting. i took my multivitamin, and ativan, and it brought the jitters down. i was still able to do what i needed to do (spend two hours with the at&t people, and the t-mobile representatives) but i was weak afterwards.

that night, i had intense lower back pain. i took a warm bath for an hour, and tried my best to think of everything else but what was wrong. it finally subsided, and the heat and the ativan sent me to deep slumberland.

to-day, i've don't nothing but lie down, and sleep. i wish the weather was better. i would have been outside ....sleeping, but still getting that vitamin d. i'm not supposed to lounge like this all the time, but i need to obey my weariness now.

the youngest is coughing, and hiding from me. i want to tell him it's ok, and that he doesn't have to worry so much, but i can't say that for certain. i can't even take a tylenol without worrying what it will do to me.

i just want it over. i want to be well.... i worry that whatever the chemo does to me will be worse than the cancer. i worry that i'm on a downhill slope of health, and that for the rest of my life i have to look over my shoulder, hoping the plague isn't trying to catch up to me.

and yet,i'm glad it's me. i'm glad i was the lightning rod in this. if i can be the only one in my circle of family and friends that gets this, then i will gladly take the punishment, and carry it away from them all.

i want to protect, and still be protected. even still.

helpless

i didn't think i was going to write this out...but i suppose i should.

when i got my port accessed at the first chemo, the nurse rubbed a sanitizing solution on it... quite roughly. she told me that the strips that held the wound to-gether should have started coming off by now, and that i should not be afraid to scrub it off.

after my chemo, when they took out the needle, i started bleeding from the incision. the male nurse put pressure on the area twice to stop the bleeding, then told me that the steri-strips had a mind of their own, and they knew exactly when to fall off, and that i shouldn't worry.

i went home, took a long bath, and the strips fell off, taking with it one of the stitches.

i was told to call about anything that bothered me. (especially if it had to do with infection.) the nurse encouraged me to come in to get it looked at. said she wouldn't even have it charged as an office visit. just come in... and let her take care of it.

so i did.

i dropped the kids off at an origami event at the library, and went in. she took a look at it, said it wasn't infected, and took the time to put many more steri-strips on the wound. she told me that the scar would be thicker on one side than the other, which didn't faze me. (i've got scars inside and out.... it'll be a pride mark one day.) she was glad to be doing some real nursing, instead of being the supervisor. (i totally understood that. it's sad that the better you get at helping people, the more they want you to teach others, and get away from the hands-on stuff you really love.)

when the nurse was done, i tried to stay in the presence of mind to thank her....but i was starting to feel weak. i am pretty sure i she didn't notice, but the moment i finished talking to her, i made a beeline to the bathroom.....

....where i stayed for the next forty-five minutes.

ever get a song stuck in your head? i had the worst one going over and over in my mind as i sat in the heavenly light of a totally clean white restroom....

can't we try just a little bit harder
can't we give just a little bit more
can't we try to understand
that it's love we're fighting for
can't we try just a little more passion
can't we try just a little less pride
i love you so much baby
that it tears me up inside

i giggle now, but then i seriously thought i wasn't going to get out of that bathroom on my own two feet. i was shaking, and.... well, i was very.... and then....

i wasn't doing so well.

....but, i got better. better enough to walk out....find the elevator... get inside.... get off...

...and sit in the first floor bathroom for twenty minutes. (hey, at least it was an improvement.)

eventually, the tummy spell ended. i was able to walk out without shaking, without stumbling, without trouble. i even thanked the receptionist for helping me before (she had been very stressed, and yet still helped someone who didn't have an appointment get to where she needed to go.)

the rest of the day had its sadness. the youngest had a bad cough, and slept for most of the day. everyone kept me away from him, which gave me a taste of how it was going to be. (please, please, please no summer colds!) my scalp is getting more achy, which means more yul brynner times for me..... but there was a sort of peace in sleeping when i needed to, and a couple of unexpected feelings to-night where i remembered i still was a pretty girl.... at least for now.

i want the beach so bad right now that i started a silly countdown to my last chemo..... that is, my last chemo if all is perfect, and i don't get sick, and nothing is delayed:

http://www.timeanddate.com/countdown/generic?iso=20140630T00&p0=402&msg=last+chemo

i know i shouldn't hope....but maybe it will motivate me to see the days tick past.... and yet i hope the lessons i learn during this take my eyes away from the clock....

how back and forth my feelings are now. more inconstant than ever....

it begins (part one of the hair saga)

this may be a bit premature.... but i need to write about my hair.

this was me in february 2013

i don't quite remember the circumstances behind this picture. i think i was in the car. it was a nice day with the sun going through the car windows beautifully... (i usually don't like looking directly at the phone camera. i usually have to be thinking of someone to do so.) this is a before cancer shot.







this was me in december 2013

it was the day when the library lost electricity because of one of our ice storms, which is why i look so pensive. (ok, forget that. i look pensive in almost all my selfies. i think i look goofy smiling.) this is when i had the lump under my arm, but i wasn't really worried about it, because it hadn't gotten big enough to where i couldn't bend my arm down.











this is me in march 2013

it was my last day at work, so i was doing a lot of soul searching , which is why i look so pensive. (yeah yeah...you've heard that one before....) i knew what i was facing, and i was sort of glad to leave work to do it. (i had been hiding things for so long, that the deception was starting to get weary.)

as you can tell, i got my hair cut in layers to help when i start going bald. interestingly enough, the stylist had to thin the tips with thinning shears to get it to layer better. (i have rebellious hair.) it's a nice bouncy cut, and it frames my face well, which is good, because i tend to hide in my hair.

i have a lot of hair... thick hair... and i'm hoping against hope that i don't get too bald, but i know that the drugs are very powerful. in fact, i can feel the tumour inside of me....and i know it's shrunk considerably. (i was told it would shrink 50% with each chemo, and i can feel the difference.)

so it goes without saying that the drugs will affect me in other areas....

there's no real reason to make a post like this. i just... love my hair. especially with the grey. (i was loving the cool silver streaks against the reddish parts of my dark brown hair that was starting to appear in my front bangs.) i like tossing it... hiding in it.... brushing it...moustaching it underneath my nose... all the impossibly girly things that one does when she's still young inside, and wants to stay young inside...

my hair is the body part that symbolizes the young part of me....

oh, well. i knew i was going to to do a hard re-boot of my system with chemo. this is one of the side effects. i just wish it wasn't a side effect so far out in front.

chemo one

we started with lab work.

we continued with weight, and temperature. i ended up having a fever (100.1), but they decided it was because of me getting used to the port, and they hustled me on through.

i had morning questions with the doctor. i found out that the goal of my chemotherapy is to be cured....not to keep me alive....not to prolong the agony...but to be cured. i knew that, anyway, but it was good to hear again. and again. (especially when she said i had an excellent prognosis.)

my doctor helped so much to-day. she answered all my questions, knowing that the more i know, the more i believe. she fixed my prescription right away (one of my drugs got filled... and i only got 1 pill in a bottle, with no refills, rather than 30 pills, with five refills. meh. these things happened.) the best thing she did was give me hope... a hug...and the promise that she was praying for me.

she's the best doctor i've ever had.... and i shouldn't have to say that. i should have had many good doctors on my side. when i get my next primary doctor, i will not settle for someone close by....but find someone who will listen, and help.

sorry... i digress...

we went to the chemo room. there were several little areas with a comfy laz-y-boy, two chairs, and a spot to put your stuff down on. oh, and the iv stand, as well. guess what? there were lots of windows, and lots of light. i was told i was going to be there all day. (that didn't bug me because i was already prepared for it.)

when they accessed my port, the nurse told me to take a deep breath, and that she was going to push against my chest. i think she was trying to get me to brace myself. i didn't feel a thing. the nurse was momentarily surprised, because she knows i've only had the port in for a few days. (and, truth be told, it doesn't look good...there's a bruise near the incision, and i still have the gauze tape on it.) luckily, i had done what they told me, and put the numbing medication on my port, and put a ziploc on top of that. (the closest thing i could get to "saran wrap."

then, they started the procedure..... (well, in actuality, i started the procedure in the morning, when i took my prednisone, and morning nausea pill before i came in.)


here is what they gave me:

a drug for nausea (i didn't hear the name)

benadrylj (for allergic reaction)...this gave me nervous legs. (a common occurrence) i walked around, and took pictures of the view, and that seemed to help a lot....the stretching, and all.

adriamycin (you eat ice with it, to prevent mouth sores. this drug is pushed through physically by a nurse) this is a good drug, used since the 1940's because it does what it's supposed to) there are four vials of this. (this is also the drug that makes the urine red.)

an hour of cyclophosphamide

two tylenol (for fever, just in case.... and aches)

then they check my vitals.... my temperature went down to 96.8! yay! my blood pressure was 104/58 with a 76 heart rate. it's wild to hear it be so low....but the nurse practitioner didn't seem to mind it...

rituxan (it ends up that this is made up of some mouse antibodies... and the benadryl will help against any allergies to the mouse.) they give it slow, to make sure i don't have any allergic reactions.

the benadryl finally kicked in, and i was snoozing for a-while. i also got to eat all my sandwich, which was a bad move. (i felt over-full... need to pace myself when it comes to food.)

my vitals get checked every 30 minutes... and once the top number was 76! the nurse said my heart rate was good, and i had no fever, but he made me sit up because i was maybe a bit... too relaxed... waking me up more gave me a better blood pressure of 103/61. (he said all was ok.... that that was what happened after a good rest. well, at least i know i can relax in odd situations...)

another time, with a different nurse, it was 96/60, but she didn't seem at all concerned. i don't know me anymore.... i can't even tell when i have a fever.

the last drug (the rituxan) went faster than the nurses thought it would. i got out an hour and a half sooner than i was quoted. i feel ...out of myself....and i would feel a lot better if i hadn't eaten that whole sandwich... (sorry, i repeat myself a lot... i did get nauseous, but a chewy candy called gin-gin helped a lot, as well as some peppermint tea.) but i have optimism, you know? if i hold still, do what they tell me, keep on top of the symptoms, and smile inside i'm sure to get better fast.

i miss me, but if this is a taste of what i'm in store of.... i'm not too far away.

here's hoping....

port placement-- the story

ok... let's try this again....

i went early to the hospital, having not eaten since midnight the night before. the financial people had already called me the day before, to get $150, so i didn't need anything but me and my identifications.

as before, we were guided by a senior citizen volunteer, who waked at a pretty good pace. he lead us down winding aisles of unused floors with seventies paint. we went to the lab, first, where the nurse took my blood to check my platelets. she asked why i was getting the port put in. "lymphoma." she physically winced, and apologized. i immediately said that things were ok, and that i was sure to be better after the chemo. (i do this all the time....it's the people pleaser in me, i guess.)

the cocoon-aged concierge led us to the elevator, and got us to the second floor. as we were going out, a doctor in a turban was going in. our older gentleman remarked that he hadn't seen the man before...."he must be from a different country." my son and i respectfully nodded, trying not to smirk.

we went to the "special procedures" waiting room, where a paula deen looking receptionist handed me a questionnaire to fill out. the basic "what diseases have you had.... what drugs are you taking...." plus "how do you learn? audio? watching a video? reading?" and a "what keeps you from learning?" section.... language barrier... poor sight.... i'm thinking the last part has to do with how the doctors will explain your operation.

after this, i was led into the operation waiting area....there were curtained areas where different bed were. we were sandwiched between a man in a wheelchair (who moaned in constant pain) and a woman in a reclining wheelchair (who had a friend who constantly was throwing out trash from the different bags hanging off the back of the chair.)

i made the cardinal sin of looking afraid as i was led in. that immediately made me the male nurse's special patient... one he had to win over. i let him overexplain everything....(this actually was a good thing because i couldn't find *anything* about the procedure online.)

i got a blood pressure cuff put on me, and an oxygen sensor clothes-pinnned to my right finger. he also put sensors on my back... my son and i watched the numbers go up and down.... ("breathe real fast! see what'll happen!")... my son said that my blood pressure was better than his was. (i always have good blood pressure. i don't know why...i eat like a southern man who's been starved for four days.)

the procedure went pretty well. no pain, no pressure. i got a shot that didn't knock me out, but kept me from caring about anything. (the nurse said "you're going to have something in common with forrest gump... you're going to get a shot in the 'butt-ox'." i mentioned that like gump, i loved dr pepper. at the end of the ordeal, he gave me two of them.... plus a little boxed lunch. nice.)

while they were tucking the port into my chest, they played my favourite radio station, and talked about hootie and the blowfish. (they were slightly weirded out that he was a country star.) i tried my best to join the conversation, but i started to feel more and more depressed. perhaps it was the fact i was tired going into the surgery (i worried a lot the night before).

the nurse said it will be good to get home, and rest. then he said, "you know what will be a better feeling? it'll be when i see you next.... when you can get this port taken out."

everyone there was full of hope. full of good words for my oncologist. trying to bolster my spirits, which are, unfortunately, fading fast.

you see, when i'm at work there are many people there...encouraging me, and making me feel included in things. i'm about to leave that sense of to-getherness.... and basically be on my own. oh, people say "let me know what i can do to help" but it's hard to articulate what i really want. constant support. caring. love. attention.

i'm about to go under the wire.... and no one will see me disappear.